Adjusting to the rheumatoid body feels like the time after my son was born; my brain was rewiring so rapidly that I barely had time to mourn the loss of the old way of life. In the old way of life before RA, I loved to walk so I could let my mind wander, and I walked as recreation. “Listening to my body” used to mean stopping at the first sign of pain. Now, I have to walk every day, just like medications. It does something that helps, but the walking itself is completely different. Instead of letting my mind wander, I have to pay attention to all the pain signals, the ones that in the old life meant a torn tendon or pulled muscle. Now, those levels of pain are normal, and I’m learning what it feels like to walk with this body. The knees yell out, but my brain has to tell them there’s no emergency. The hips fire, even the shoulders protest, but that’s all normal. I have to pay attention to my feet, watching if they’re level, with the kind of intensity that I used to reserve for rough-trail hiking. Every day the pain feels different: like a thunderstorm, like a wet suit, like a maze or a map.

I won’t take a picture of this hotel room, but I thought about it. I’m 40, but I’m still not over the thrill of just a nice hotel room at someplace that’s not a Motel 6 (although I love the 6s and the 8s). Tonight I am in Washington DC for the AWP conference for writers, and I’m thinking about other trips to DC. About eleven years ago I flew year for a seminar my first year in journalism grad school, and almost all I remember of the trip was the hotel room. Just that Barbie feeling–look how nice this hotel room in a real city is. And someone else paid for me to stay here.  Tonight I’m feeling overwhelming gratitude for a travel reimbursement through my teaching job, for dinner paid for by Ashland University, for the chance to go to events like this, for book signings and community with other writers. It still feels surreal. I might never get used to it, but I think that’s probably better. Today I walked through the lobby of a hotel where I had a job interview at MLA maybe six or seven years ago. I couldn’t afford to stay overnight then, and I was still breastfeeding, so the plan was to fly out to DC and back in the same loooong day. I left my son with my mom in Chicago, flew to DC for the interview, and then got stuck in traffic on the bus on the way to the interview. Public transportation, not even a private shuttle, and I was so late I had to change into my interview suit in the bus. There wasn’t even a bathroom on the bus; I just kind of draped my coat over myself and hiked up my pantyhose and everything. I ran; I barely made it through all the MLA byzantine complexities to get to the top-secret hotel location. I carried all my syllabi in a totally cheesy purple binder that looked like a trapper keeper. The trapper keeper fell open and spilled my syllabi all over the floor in the middle of the interview. Didn’t get that job, and it wasn’t even my worst academic job interview ever. That one goes to the previous MLA, where a professor told me he was expecting someone “more Reba McIntyre” based on my writing sample. I’m not Reba. I’m just aware that we are very lucky, those of us with the money and the time and the family support and the flexible jobs that enable us to come here to talk about writing and passion and art.

Thank you to Sarah Buttenwieser for an excellent review in Brevity Winter 2011 (35)! Sarah writes about Cover Me: “Her tenacity, ingenuity, and steady wits awed me. Few people could finesse the system to extract the type of affordable care she obtained. The way she writes about her fighting-for-access drama causes readers to hang on every word.” Sarah runs a cool blog at The Valley Advocate called Standing in the Shadows.

Okay, I’m going to be honest about a tough thing… not the toughest thing ever in my life, but the current challenge: rheumatoid arthritis. It came on last summer after my thyroid swelled up and shut down. Thank god my mom had the same thing happen to her at the same time; she provided the road map. The backdrop is a thousand well-meaning people advising me to swim and do yoga, not understanding that this condition is an incurable autoimmune disease.

And here’s the part that hurts the most: my hands. My typing hands. My connection to the world, my way of finding my own mind. I can feel it now as I type these words. Middle joint of left thumb, top joint of right index finger, other smaller aches elsewhere among the web of knuckles and the wrists.

Writing is the joy that saves me. It is better than any other activity for my pain because it reminds me who I am and keeps me in touch with all my past selves. It reminds me to look beyond the pain. (Oops, I tried to straighten my posture and the right shoulder and left elbow protested in response). Sitting up straight and the hips fire back.

This is a chronic condition but I’m in a flare up after diagnosis, which is supposed to be the worst part. I’ve graduated from pills like methotrexate and am waiting for a biologic injection treatment to begin, the new round of expensive wonder drugs that may put me in remission.

Some days I am grateful for my narrowed focus, pushed in on either sides by pain. “No” is much easier to say these days, but it comes with grief. Half the time I say no to things I wish I could do but know my body can’t handle. This is not an old-person’s disease. It is a chronic pain thing, and the presence of the pain is complex, interesting, and also maddening. Pain is a forest. Pain is a forest it’s hard to navigate through when there’s a seven year old on the other end of the couch nagging me to look up on Google the cheat codes for Mahogany City on Pokemon HeartGold on his DS. I feel like less of a mother. I had to miss most of a chess tournament yesterday. Probably even writing this is going to send me into the hell of pre-existing condition when I try to get new insurance. But it is what it is.

Yesterday I had a thought that comforted me, that spread relief through my body. I’m sure this thought would be maddening to many people who have a warlike combative stance toward their illnesses. But I don’t “have” rheumatoid arthritis, because as a Buddhist I think I don’t “have” a separate and encapsulated self. Instead, rheumatoid has become part of who I am. That’s the route toward true acknowledgment for me. And that adds a layer of curiosity. What does a rheumatoid woman do? What does the rheumatoid body want? What is rheumatoid’s favorite color? It’s my body “attacking” itself, but even that language puts a conflict inside me that I’m not sure is there. It’s a sign, instead, of my body misunderstanding itself, and oh lord is that an old story. That’s one I can live with. It’s hard, in a culture where solutions and blame are offered daily as our soul-food, to find space to become this rheumatoid woman in pain, a foreigner who doesn’t want to do battle with her body.

I had a great time making up a playlist for Cover Me for David Gutowski’s largehearted boy blog, which has a feature he calls “Book Notes” that lets authors imagine music for their writing. At first I was kind of daunted and kind of thinking in serious thematic terms, and then after a while I weeded out a few of the social commentary pieces I love to make room for some Dead Milkmen. There has to be at least one mix tape in the world with the Milkmen, Woody Guthrie, Social Distortion, Bob Mould, L7, John Mellencamp, and Lucinda Williams. One thing I learned from this is that every mix is more about the person making it than the theme. I’d probably figure out a way to justify all these bands for an Opa Nobody list. Maybe I’d have to throw in some Hubert Kah or Herbert Gronemeier.

Thanks very much to Dianne Feeley of Against the Current for this interview, “Living and Working Uncovered,” about the experiences that prompted me to write Cover Me. The interview appears in the Jan./Feb. 2011 issue, which is the magazine’s 150th.

Thanks to RedRoom and AOL for another chance to talk about healthcare; my second commentary, “ObamaCare Socialism? Not On Your Life” is up on the AOL op-ed page. Many thanks again to Gina Misiroglu of Red Room, the authors’ site, for putting me in touch with AOL and for having the idea to connect my book with the Op-Ed page. The debate is a raging one this time. Whew!

Doug Dangler of the Center for the Study and Teaching of Writing at Ohio State University interviewed me (broadcast on Nov. 8, 2010) for a program called “Writers Talk” that’s broadcast in Columbus, OH. We had a great conversation and then he edited out all my “uhhh”s and “dude”s and “awesome”s and made me sound very coherent. Thanks, Doug! Listen here.

Thanks to Lisa Romero at ForeWard for this great review of Cover Me:

“Huber’s tale resonates. Who hasn’t encountered obfuscating obstructions in even the best health plan, to say nothing of the millions of un- and underinsured who will read with head nodding (and maybe fist pounding). Amid her many joyless ironies—like working without benefits for a coalition advocating universal healthcare—Huber injects humor and wit, tinged with a humanity clearly honed by experience at every rung of the slippery healthcare ladder. The rest of the story—about love, friendships, motherhood and career—keeps the reader rooting for Huber, hoping she’ll find not just healthcare but a happier, healthier life.”

My opinion piece, “Will Health Reform Help Small Businesses?” is up today on the AOL op-ed page. This was an amazing opportunity–many thanks to Gina Misiroglu of Red Room, the authors’ site, for putting me in touch with AOL and for having the idea to connect my book with the Op-Ed page. It’s fascinating to see the comments–sort of a mini-portrait of the healthcare debate. Here’s my Red Room site. Red Room is a cool way to put all kinds of content up on the web and make it accessible to readers in a nice-looking package. And the smart people running it actually pay attention to what the authors are writing and connect the dots. :)